Before I keep going, I want to express how lonely it can be to trudge through life surviving a disease that people do not know about. I spend substantial time and energy educating friends, strangers, and even doctors about my condition, which leaves little room for receiving compassion and empathy – like the supportive gestures people usually offer to someone who has a disease in the limelight. Everyone knows cancer is bad, but AS is not a well-known disease, so for a celebrity to name it on stage is life-changing.

Ankylosing Spondylitis is not rare. It is an extremely painful, severe inflammatory condition. Our bodies attack our own joints, causing pain and fatigue. In severe cases our spines can fuse together into rigid, fragile columns of bone. This happened to my own father, whose spine was completely fused at a 90-degree angle. There is no cure for AS, but it is possible to slow its progression and manage symptoms with specialized treatments and, often, with diet and exercise.

I had done some research about Dan before our conversation but was more interested in talking with him directly. What I found ahead of time is that we are the same age and Ankylosing Spondylitis runs in our families. What I did not know yet is that Dan is 6’5” and Imagine Dragons received a Grammy Award for Best Rock Performance.

His diehard fans are probably throwing popcorn at me right now.

I did not want this to feel like an interview so I broke the ice with a piece of my own history:

“So, I’m a model, and my first ever real fashion show was walking to Radioactive.”

Dan cracked a grin, “No way!” and high-fived me.

Game on.

This slideshow requires JavaScript.

It turns out Dan and I have had many similar experiences – far too many to share in one article – so I will share three things that stood out during our conversation:

1. Ankylosing Spondylitis runs in our families.

Two of Dan’s brothers have AS. Before he was diagnosed, Dan would take part in teasing them when they could not do certain activities. If one of them bowed out of lifting something, attributing AS as the reason, the other brothers would say, “That’s called lazy man’s disease, hahahaha.” So, when Dan was diagnosed, it felt like karma caught up with him.

Before his diagnosis, Dan had a lot of pain, but, he says, “I kept it to myself quite a bit too because it was like code of the brothers: ‘don’t complain to your brothers, complain to your mom.’” At the same time, he probably would have waited longer for a diagnosis without his brothers’ help: “I had misdiagnosis after misdiagnosis, and then finally, my brother was like, ‘look, it’s probably AS, go see this specialist.’”

The biggest difference between Dan’s story and mine is sex chromosomes. When I was younger AS was believed to be a man’s disease, so we did not seriously entertain the possibility that I could inherit it. What we know now is that AS is much more common (and maybe equally prevalent) in women than was previously believed. It took 13 years for me to be diagnosed. It took about 6 for Dan.

Ankylosing Spondylitis is not purely genetic, though there are genes commonly associated with it. Many of us who inherit AS have experienced an “oh, shit” moment after our own diagnosis when we realize everything we’ve seen our family member(s) go through is now our battle, too. This was the case for both Dan and me.

Dan has a young daughter and newborn twins – I asked him if he is concerned they may inherit AS. He admits that he has thought about it quite a bit, but is optimistic about the future: “I think that by the time it comes on, it would be later in their life. I hope they’ll have more management plans that work for people – I just don’t want to be fearful about it.”

2. We have both found unwavering support that we don’t take for granted.

We discussed at length how Dan’s wife and band-mates have been supportive from the beginning of his diagnosis:

“They’ve seen me on my worst days, they’ve seen me on my good days, they’ve cancelled shows with me when I’ve needed to cancel them and never made me feel bad about it. Never once have they ever made me feel, like, ‘toughen up.’”

He holds onto enough stress for all of them, anyhow:

“At this point in my career it’s devastating to cancel a show. We’ll be in Poland, and we haven’t been there in two years and there’s 20,000 people there to see us and I’m – it’s all on me.”

Dan is working on getting some positive karma back from when he was tough on his brothers who have AS. He now works with them and says he is regretful about how he treated them before, “because now I understand they were in a great deal of pain mentally, physically. I mean, it is overwhelming to have that diagnosis on a lot of levels.”

Dan and I both recognize that we’ve been fortunate to have the amount and type of support we’ve received from those close to us. Without it, we don’t know where we would be. In Dan’s words, “When you have a disease it leads to a deeper compassion for yourself, for others…because when your health is gone, nothing else matters.”

3. We are committed to bringing awareness to AS through our passions.

Dan and I entered the advocacy world a bit differently. He’s, ahem, kind of famous, so he fell into the role of spokesperson simply by mentioning on stage that he had this disease. My path has looked quite different – after my diagnosis, I was open about my diagnosis with everyone around me, but my platform didn’t yet exist. What isn’t different, though, is our commitment to raising awareness about AS through our passions. For Dan, singing. For me, modeling and writing.

We both believe more people should feel empowered to share their stories, which we feel will raise awareness about AS, and, Dan says, “could open doors for relationships – friendships – and not just that, but really help other people feel comfortable to open up.” That’s why we both feel support groups, blogging, and advocacy groups are so important.

The question I most wanted to ask Dan came in the form of a statement: “I don’t know if you have a goal for advocacy, for what you want to do. Mine is to make AS a household name.”

“Bingo.” Dan said, “I was just gonna say raise awareness for it, but that’s a better way to put it…I would say my goal would absolutely be to jump on your wagon. To raise awareness would just be huge.”

At the end of my time with Dan, it felt like we had become siblings – our mini photo shoot is evidence of that. Dan placed his hand on top of my head and rested his head against mine. Someone said, “Put your hand on his head too.” I did, and we laughed. Pictures continued as we goofed around and carried on our conversation between smiles:

“Are you 6’5”?” I guessed.

“Yep.”

I had a sudden idea.

“So…I have this thing about picking people up.”

“You wanna pick me up?”

“Yeah. You ready?

I knew my back would retaliate later, but I didn’t want to miss an opportunity to lift up a new friend and fellow spokesperson for AS.

This slideshow requires JavaScript.

Afterwards I walked to a nearby coffee shop. As I sat down, an Imagine Dragons song, Demons, began playing over the radio. I chuckled to myself and listened to Dan’s voice fill the small room. When the song was over, I pushed play on my recorder to listen to the conversation we’d just had. An hour and a half later, as my laptop clicked shut, another Imagine Dragons song began. On Top of the World serenaded me out the door.

I smiled. What a great analogy for our conversation that began with undertones of the demons we fight and ended with a shared goal to make AS a household name. I’m looking forward to what’s next for this friendship.

Ankylosing Spondylosis pain are common.A herniated disc results when a crack in the strong outer layer of cartilage allows some of the softer inner cartilage to squeeze out of the disc.Thanks for sharing information about ankylosing spondylosis .Get more information for Ankylosing Spondylitis Treatment Nagpur

Hi Charis, What a great piece. I am a big fan of both you and Dan. Dan’s announcement about AS was very inspiring to me. It has helped me be more open about my diagnosis. Keep up the good job of advocacy both of you! It took me 10 years to get diagnosed and I figured it out myself before the doctors did. My grandmother also had AS but she passed before I was diagnosed. Sometimes I wish she hadn’t so I could have shared the journey with her and also just let her know I knew how much pain she was in.

I loved this! I also have AS – and the delightful passengers that are Crohn’s, Uveitis and Peripheral Joint Arthritis.
When I was diagnosed, at 39, I went to University and started to write. Ten years later, after a BA and MA, my PhD is due to be completed this year. My blog is here: https://jayneyrambles.wordpress.com
Keep fighting…and keep writing!
Jayne

This is a great article! I love Imagine Dragon’s music, and had no idea their lead singer had AS. It took about 18 years for me to get a diagnosis, and it was so frustrating, because doctors would misdiagnose me, or ask me if I had been in a car accident. I had no family history of AS. I feel like I could write a book about what I went through. I started being very careful with my back at a younger age because of the pain. Fortunately, thanks to a great rheumatologist, I have my pain mostly under control. I’m glad you are out there raising awareness.

Hi Lynda,
Thanks for sharing a piece of your journey. Indeed we do go through so many frustrations! Had I been diagnosed sooner, I know I probably wouldn’t have jumped off the highest bungee jump in the world…now I’m super delicate with my body and it feels so odd!!
Keep taking it one day at a time – and hold onto that rheumatologist!!!

I was diagnosed 1.5 yrs ago. I feel like I am getting worse everyday. It started as pain in my right hip/ SI joint and sciatic nerve pain down my right leg. Now, it is on both side, left and right SI joint, sciatic nerve pain down both legs, some days unbearable neck pain, shoulder and shoulder blade pain, nerve pain in my arms, heel pain and here recently now pain in my mid back. I feel hopelesss. I am happy to read about awareness of this awful disease being spread. I wish there were more studies being done to find a cure or at least something to just really stop progression and help with all the pain. I am only 29 yrs old with 3 young children. I have a 5 yr old boy, 3 yr old boy and 8 month old daughter and I am so sad everyday knowing that they will have to grow up having a mom who can not run and play with them or do more active, strenuous activities with them. I would love to become involved in anything to help spread the word about AS and help promote more studies and awareness.

Katy, I’m so sorry you are going through so much. This isn’t easy. I’m glad you are connecting (at least it appears you are) with others who also have AS. If you are wanting to get involved, you may get some ideas from my post about ways people can become advocates (linked below). I also highly recommend becoming involved with the Spondylitis Association of America (if you’re in the US) or another country or region-wide AS/Spondylitis centered organization. Keep taking it one day at a time – and thank you for keeping fighting. https://beingcharis.wordpress.com/2017/02/06/14-ways-to-become-a-chronic-disease-advocate/?frame-nonce=0d7f1148ec
-Charis

Great article, Charis. I was diagnosed 5 months ago, but I feel fortunate for it to have come at a time that Dan, and others like yourself, are bringing more awareness to the world than ever before. I had never heard of AS until last December. My wife, mom, and mother-in-law are all nurses and had never heard of AS either. Whenever I do meet someone who has heard of it I get all excited like we share some bond and should be friends :). It shouldn’t be that way. Thanks for helping spread the word. I hope I get to high five Dan someday, too.

Thanks Scott, I’m sorry for your diagnosis but glad you are doing what you can to connect with others who have similar journeys. Hey, and even though I’ve been advocating for a few years, I still get super excited to meet someone who has heard of AS (especially doctors, surprisingly)!